So after a wonderful week-end of visiting with family and wonderful new family (the Portner family) we go to our much anticipated Dr appointment this morning. Well Dr Sandhu, believes that Shira's real medical challenge causing her new issues is her scoliosis and that the tethered cord is 2ndary to the scoliosis. Dr Sandhu feels that Shira needs scoliosis surgery as her scoliosis is pulling on the spinal cord and that doing scoliosis surgery may relieve the tethered cord. He believes this is the surgery that should be done first and is referring us to Dr Akbarnia in San Diego. He feels doing the TC surgery may not be necessary after the scoliosis surgery. He believes that Dr Akbarnia will do the surgery even though 2 top orthopedic surgeons in Southern CA already told us Shira's curve isn't bad enough to warrant surgery and they didn't believe it was her scoliosis causing the issue.
I spoke with Dr Henderson about this and of course he disagrees and believes that the scoliosis can improve once the tethered cord is released. He is frustrated as he truly believes this is not only the right surgery but also the least invasive procedure that can give Shira the best possible outcome.
I am feeling like Shira has become a hot potato, being passed from Dr to Dr. and it is extremely frustrating as I refuse to allow Shira to be in a wheelchair any longer then she has to be. Shira is ready to throw in the towel and wants to go home.
Through a facebook group for EDS and related surgery's, I have gotten the name of a Pediatric Neurosurgeon in Richmond, VA, Dr Gary Tye I called his office and pleaded our case and not only were they willing to work Shira in to see Dr Tye this Wednesday, the nurse I spoke with knew all about EDS and the complicated diagnostic issues. For me, Dr Tye will be our Tie breaker (no pun intended) So for now, all we can do is wait and oh course, change hotels yet again.
Shira isn't happy with me so I think I will put myself in a time out downstairs in the hotel bar!
hugs
1 comment:
Sounds complicated! Enjoy your time out.. :)
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